I am looking for some feedback and experiences with Sympathetic Nerve Blocks. I am new to this whole "CRPS...RSD" nightmare!

My Pain Specialist just performed a series of 3 lower lumbar blocks over the past 8 weeks, and I am trying to decide if they really help or if we are just spinning our wheels. He said if we don't get any better results, then he wants to do some kind of spinal stimulation. Not sure about that either! HELP!!

First block only lasted 5 hours. I initially had no feeling in my entire leg for about an hour then it slowly returned to normal. It warmed my leg/foot to 91 degrees which felt wonderful while it lasted. Over the next few days I really couldn’t tell if it helped my leg/foot was right back to subzero frozen and continued to have all of the normal (LOL) symptoms and pain that I have been fighting for months.

3 weeks later, 2nd block was performed. I had about 6 hours of relief from the cold - 95 degrees. Then when the temp started to drop, my knee (which is the original trauma area) went crazy. It had a fever of over 101 and swelled to twice normal size. The burning and intense pain caused my ears to ring and I was climbing the wall. Called Ortho the next morning and went in for a cortisone injection to help the bursa area and related areas where the nerve damage is to calm down. Funny part is my leg/foot was stone cold and was back to molten color. After a few days, my knee calmed down and I was able to handle the pain better but I had a hard couple of days. Saw no additional relief from the block.

2 wks later (Wed this week), back for third and final block. Block went fine but I had no feeling in my upper thigh for about 2 hours. Temp in leg/foot was 95 degrees and the pain was substantially down for the next 5 hours. Then the temperature in my entire leg (hip to toe) started rise. It went to over 101 degrees and I thought I was on fire. My leg was bright red and the burning was bone deep. The pain was off the charts. It lasted for almost 5 hours. Finally the temp started to decrease and my leg stayed lukewarm for the next several hours. Finally, by mid morning the next day, entire leg/foot was right back to the frozen tundra and the normal awful symptoms returned.

Today is day two since the block and I am back to wearing my wool sock and dealing with the same pain and discomfort as always. My knee (I call it my sweet spot) is starting to hurt again but they don’t want to inject again so soon. So I suffer!

Do you keep doing blocks to see if you finally get response or if you are too far along with RSD do you just mark this treatment off the list and move onto the next option?

I just want some kind of relief… Is it possible?

I really think it depends on the indivual and how YOU feel about getting the nerve blocks. It sounds to me as though you aren't getting that much relief and the pain/numbness increases for a little while afterwards so it makes me wonder whether the blocks are worth it in your case, especially just for 6 hours of pain relief?

I have had 3 nerve blocks. I was diagnosed with RSD when I was 12 years old and my doctor decided to do a Guanethidine Block into my foot around the ankle bone.

I was put to sleep for the block due to my age as my doctor thought it would be too scary for me. The blcok didn't work at all and it made me a LOT worse!!

When I woke up from the block, I found that I couldn't walk. Everytime I tried to get up and walk, my legs would just shoot out in front of me and I would fall to the ground. My doctor thought it would pass so sent me home for the weekend.

As we were home, my mum found an article on the internet stating that you should never inject into an RSD limb unless you absolutely have to has it has been proven to make things worse. My doctor didn't know that before the block unfortunately and didn't give us enough time to read up on it as he wanted it doing ASAP.

I returned back to the hospital 2 days after the block to see my dr and still couldn't walk. He was stunned as to the side effect I was having from the block so took videos of my walking etc.

We kept getting told that the affects would wear off but they didn't and I was left in a wheelchair for 13 months which was extremely hard to cope with. I lost all of the independence I had and had to rely on my mum to take me everywhere which wasn't nice for a 12-13 year old!!!!

In about April of last year, I developed an ingrown toenail on my RSD leg. We kept trying to ignore it but it got really badly infected so we had no choice but to have it taken off. My dr put me to sleep for the procedure and decided to do a ring block into my toe to try and ease the pain after the procedure.

Once again, my body reacted to the procedure and I developed severe myoclonic spasms in my leg. My leg would jerk around on its own uncontrolably. My dr couldn't believe how bad it was and said that I have the most wound up nerves he has ever seen and I have to stay away from all procedures to my RSD limbs unless neccasary as they will only make things worse.

At the end of last year, my PTs decided to make a splint for my RSD leg as I have pretty bad Dystonia (a movement disorder) in it. I had to be put to sleep for them to make a cast for my leg as they can't move my foot hardly whilst I am awake and even when asleep, it takes a lot of force.

My dr knew the procedure would increase my pain so did an epidural and put Ketamine in it. I didnt want to have the epidural seeing as though the blocks made me worse but he assured me he would be careful.

Thankfully, the epidural went well and I got about 6 hrs pain relief from it which was really good!! My dr wont do any more now though as he said it wasn't really worth it for the ammount of pain relief I got.

I think it might be an idea for you to speak to your dr and see how he feels about doing the blocks and whether they are worth doing seeing as though you dont get much pain relief. How long have you had RSD? I know the blocks are proven to work better within the first 3 months of onset.

It is really you that has to decide whether you want to go ahead with the blocks. No one can force you into doing anything you don't want to! Weigh up the pro's and con's and then decide if they are worth it.

As for the spinal cord stimulation, i'd do a lot of research into it before going ahead, especially if you are relatively knew to the diagnosis and haven't tried all of the options available to you. I think sometimes drs want to push the invasive procedures without trying all of the other stuff first.

I wish you the best of luck and know you will make the right decision whatever you decide to do!

Please keep us posted when you can!

Alison.

Dear AJ -

How long have you been symptomatic? The reason I ask is that there is fairly strong evidence that blocks are most effective when initiated within the first four or five months of disease onset.

Although I have absolutely no evidence for this proposition, I have a hunch that one of the reasons I didn't get aggressive spreading was because I was getting regular lumbar sympathetic blocks early on, until I no longer had any response to them, roughly 8 months after the pain first set in. That said, there may be a number of people on the forum who got prompt blocks but to no avail. This maybe worth a poll.

Mike

My Doc's both Ortho and Pain Specialist are thinking that I am more than a year into this. They just put a name to the symptoms a few months ago but they are my newest set of doctors. After all of my research I realize now that I have had progressing symptoms for a while. Shortly after my first surgery back in Oct 2007, I started having the burning sensation and swelling in my lower leg. This is when my FORMER Ortho - walked out on him when he acted like I was crazy when I kept complaining about the bone deep burning sensation that wouldn't go away. Got second opinion for my knee and have two bone plug surgeries since. Now RSD is full blown in entire leg. Hope this makes sense!

AJ;
It seems your "former" ortho is worried about his liability, or well, who knows? His ego got busted down... Do with that what you will... Seriously!

Get on to getting as best as you can be..
RSD is not curable.

I'm going to tell you a bit about my nerve blocks by the MAN, DR Schwartzman, in Philly.
They were done oh, say around 1989ish....?
But, they were done only on a DIAGNOSTIC BASIS!

In other words, they do a nerve block, in the AM, EARLY! (One of those GIANT ***'d Stainless steel needles that hang on the wall with others, handed down from generation to the next.. I saw that thing taken off the wall, and my "stats" started beeping. OK, something like Valium 50mg was introduced (nice intro, huh?).
The guys feels around those two kind of WTHeck are they called, one on either side of my Adam's apple, yea, he gets it and sticks that GIANT thing into my neck, right next to that (tendon, or whatever it is), right above my collar bone. (STOP, if you put your hand there, you can feel it).
So, he sticks it in, (I"m awake), and all my monitors are beeping again!) My feet are NOT on the bed! (Can you imagine? This GIANT TWO FOOT NEEDLE is stuk in my neck, and he's "diggin" around with it!) AGH!!!!!!
Oh Lord!
That friggin' "Needle" is in me, and, he starts "digging around" with it. ARGH! I could feel/hear the ripping/tearing that the needle was doing! Can you feel that? WHAT? YES!!!!!!
Pump in more relaxer...
As if it's gonna help now....
(remember, I was taken out of full sleep, to do this).

YAK! More digging and tearing, OUCH! He's shooting that stuff (who knows what?) into me.
Okay. Whew........................
I'm rolled back to my room, and rolled into bed.
Doctor Schwartzman comes in, on morning rounds with a dozen students, (as usual). which is fine w/me.

My entire right side of my face, and arm, are NUMB!, back through my shoulder and all that.
BUT, AND
HOWEVER!
The Pain was still there!

Dr S, says, I knew it, you're too far gone.

Meaning, Too far gone for a Sympathectamy!

(Do they still do those?)

This is all I know about "Nerve Blocks", they were diagnostic, NOT Treatment!
(Yes, I understand that the "cycle of pain" must be broken, as pain, begets pain". But, that's still another "thought / theory" that if they break the "cycle", it will stop the pain. IMHO, NOT LIKELY!)
Stopping the cycle is Great! But, it WILL restart!

They've got to "break the cause!"
RSD is not a Cycle.
It is cause and reaction!

So then, they did this again when it moved to my legs. Same thing over again.
Same agony. (Easier to ignore in my *** and leg) sorry.

Nerve blocks are not a treatment, IMHO.
They're diagnostic only.
I am not a doctor.

Yet, I want to be shown a doctor, who has cured rsd, or even helped it for a while, with nerve blocks.?*

*there are specialized situ's where a nerve block, may help for a month, and thus, keep you from taking daily meds that may affect your function. That's completely different, and I have very little knowledge of it. I do know that my own doctor has it done. Yet, he has it done for his back, I know of Nobody, with Full body, who can get by on nerve blocks, if so, please tell me?

I wish you AJ, and all the rest, the very best of pain relief.
Meds affect us all differently. It's up to finding that "One Particular Doctor" who will stand with you, as a partner, and help you thwart this bastard off ya! And, keep it at Bay!

Pete
Asb

Pete -

I agree that the data is sparce, but there is evidence that patients starting blocks within a few weeks of the onset of CRPS had significant relief lasting two weeks after the last injection, while the farther out treatment was, the less effective it would be. "Efficacy of Stellate Ganglion Blockade for the Management of Type 1 Complex Regional Pain Syndrome," Ackerman WE, Zhang JM, South Med J. 2006; 99:1 084-1088 at 1087, free full text at http://www.rsds.org/2/library/articl...lion_block.pdf

Patients who had early SGB treatment following
the onset of their symptoms had significantly better
pain relief following SGB therapy (r = 0.9).

Now, while I understand and appreciate Karen's point about blocks not working once the pain is SIP, I suspect that something deeper is going on, where the pattern of response as a funtion of the interval between the development of symptoms and initial treatment in the SGB study almost exactly maps with the results of studies strongly suggesting that low dose ketamine can have lasting effects, if and only if initiated within a few weeks of the advent of symptoms. For a good comparision of the results of several low-dose ketamine studies, see the "Discussion" section of "A Pilot Open-Label Study of the Efficacy of Subanesthetic Isometric S(+)-Ketamine in Refractory CRPS Patients," Kiefer RT, Rohr P, Ploppa A, et al, Pain Med. 2008; 9(1):44-54, 50- 53, free full text at http://www.rsds.org/2/library/articl...ohr_Ploppa.pdf. And for anyone who doubts the proposition that ketamine administered early enough can in fact be a "cure," read one of the greatest studies ever published, "Subanesthetic Ketamine Infusion Therapy: A Retrospective Analysis of a Novel Therapeutic Approach to Complex Regional Pain Syndrome," Correll GE, Maleki J, Gracely EJ, Muir JJ, Harbut RE, Pain Med. 2004; 5:263-275, free full text at http://www.rsds.org/2/library/articl...V_Ketamine.pdf.

Something significant is clearly going on here.

Makes one wish that we all had have the level of care that I understand is available in Germany, where local anesthetic is pumped for some time into the affected area, immediately upon the advent of symptoms.

Mike

I had my first lumbar block after 2 year of rsd a month ago and it increased my pain. I had put it off due to that fear but after other doc before this one who again suggested it wanted to do more major like scs and my pain was so high I decided to try one. I guess of course I am not happy with it increasing my pain which lasted the flare up for a couple days it did give direction and now I am back trying meds again and a different approach and it also led me to the possibility that the scs for me would also do similar to what the block. I have heard of people getting relief to where they are able to get active which is key with rsd. Can you see another pain doc to get another opinion? Have you tried any meds? I am sorry you are suffering and wish I had more answers

AJ -

My sense is that one should stay with them even if you get only one day's relief, where I have a hunch they are doing some good below the suface, so to speak. But what I was advised by my treating pm, way back when, was that once I no longer had any response in terms of relief from pain, there was no point in continuing the treatment.

I would urge you to discuss this with your current treating physicians, who appear to know what they're doing.

Mike

At some point all people with rsd have their pain go SIP, sympathetically independent. This is the reason your pain increased after the block. Your pain was already independent at that point. WC made me get a block a year after rsd started and it threw me into a full body flare for 2 months.

Blocks only help pain that is SMP, sympathetically maintained. There is always hope when the pain is still SMP. Once it is SIP, blocks will not help at all and, from experience and talking to LOTS of people lol, it typically increases pain for awhile.

The SCS is not something the top rsd docs want any rsd to get, period. It is too invasive and the majority of people get much worse with big time spread and multiple surgeries after scs implant. The scs only helps pain that is SMP too. It does not touch pain that is SIP.

Hope this helps some of ya'll out in understanding the why.

Hugs,

Karen

I had a series of 7 SGB in Boston at St. E's - the first was Christmas Eve, the last one was May 11th. When my doctor administered the last block, he used more medication than he had in previous blocks with the notion that it would be my last, because he was referring me to the Beth Israel where he thought I would be accepted into their low dose ketamine program (a disastrous appt for me - I still cry about the monstrous docs I had the misfortune to meet, and the fact that meds exist that can help me that I'll never be able to get. Life is truly not fair.)

In any case, the 7 blocks gave me about 6 months of relief from many of my symptoms. My life wasn't perfect, but it was so much better than it is now. Since the last block wore off, I am flaring out of control so that even my Methodone isn't helping my head pain much anymore. I took a medical leave of absence from work as of last friday.

The last block may have caused my RSD to spread to leg, or perhaps it was going to spread anyway - I'll never know. But I am sure that I now have RSD in my right leg.

I am heading back to St. E's on Tuesday. After I have an MRI of my back, I may have a lumbar block done. And perhaps I'll have another SGB done to help my head. I don't know if they'll do both. But I do know that I would rather live without the pain and other symptoms, even for a period of just 3 weeks, than live like this.

Sandy